State Report On Autism Addresses Gaps In Health Care, Services

A sweeping new report on the status of autism services and supports in Massachusetts finds there are still “tremendous” gaps and offers recommendations on how to better address the needs of adults and children on the autism spectrum.

The Governor’s Special Commission Relative To Autism was established in 2010 to provide a snapshot of autism in the state, but more specifically, to focus on what types of support systems and services are available for people with autism and identify shortfalls that might exist.

The Commission reports:

…that tremendous gaps in services and supports still persist and that there is a critical need to develop a comprehensive statewide approach that will respond to the needs of this burgeoning population. For example, our findings confirmed that many children and their families continue to struggle to receive the educational, behavioral, social and emotional supports necessary to transition to adulthood at age 22 and often leaves many without the specialized programming and assistance that is essential to ensuring success in the community.

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Beyond this, three critical needs were identified:

–Individuals with autism of all ages need a single entity to provide comprehensive information and referral support
–Mental health services are difficult to access and need to be widely available and tailored to the unique needs of this population
–Eligibility for adult services needs to be based on functional ability rather than IQ. In addition, many adults need housing, job coaching to obtain and retain employment, and case management to assist in realizing their potential

The recommendations, clearly, are far-reaching. But what struck me is that despite all of the recent attention on autism — the research into potential causes and treatments, the investigations on rising prevalence — there remain disparities when it comes to basic health care for people with autism. This report specifically recommends improving the delivery of health care to this population:

There are many factors that impede this population’s access to appropriate health care and even when individuals with autism have insurance coverage for medical procedures, they can sometimes still struggle to receive adequate health care. Barriers to health care are created by the lack of medical providers knowledgeable about autism and/or lack of specialists available to diagnose and treat individuals with autism. This is particularly the case for young children since there is a dearth of diagnosticians which consequently delays formal diagnosis and access to treatment and services during critical developmental stages. Throughout their lifespan, miscommunication with the medical professionals can occur. This is especially problematic for individuals with autism who are unable to effectively communicate with medical professionals and also individuals who do not speak English.

Here are recommendations from the report:

— Provide funding to state schools in order to establish the Operation House Call program as part of the curriculum for medical, nursing, dentistry, physical therapy, occupational therapy, speech therapy, and other specialty degree programs.

— Identify medical practitioners across the Commonwealth who have received training and consider themselves specialists in the healthcare of individuals with autism and develop specialty provider lists that will be available on the Autism Resource Center websites.

–In order to increase the number of medical providers who are knowledgeable in autism including primary care physicians, nurses, dentists, physical therapists, occupational therapists, speech therapists, and other specialists, the legislature will establish a fund to provide scholarships for students attending state schools including state run nursing and schools of dentistry who are either studying issues related to autism and/or plan to work with individuals with autism upon graduation.

–Encourage hospitals to develop an “autism team” who could be called upon should a patient with autism enter the emergency room, need tests or X-rays, need to be admitted, etc. This “team” would be knowledgeable about autism and communication difficulties many people with autism have and could advise MDs and staff how to communicate with the patient.

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Massachusetts is the leading laboratory for health care reform in the nation, and a hub of medical innovation. From the lab to your doctor’s office, from the broad political stage to the numbers on your scale, we’d like CommonHealth to be your go-to source for news, conversation and smart analysis. Your hosts are Carey Goldberg, former Boston bureau chief of The New York Times, and Rachel Zimmerman, former health and medicine reporter for The Wall Street Journal.

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